Olfactory Neuroblastoma

kisherwood
kisherwood Member Posts: 1
in Rare and Other Cancers #1

Hi,

My husband just had surgery to remove a polyp in his nose/sinuses. It was a tumor originating from the Olfactory nerve cells. The biopsy could not confirm whether it was benign or cancerous. He is scheduled for an MRI this week. The doctor said there will need to be more surgery to make sure all of the tumor was removed. What do we do now? Should we request another opinion of the biopsy. Will the MRI tell us if it is cancerous or not. I am concerned it will not be treated aggressively enough if they can't tell if it is cancer or not. Did anyone else have this experience?

Thanks,

Kim

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited June 2017 #2
    Second opinion!

    Dear Kim:

    I do not know of this type but as with anything, if you are unsure it wouldn't hurt to get a second opinion especially if you are feeling unsure.

    My best to you and your husband.

    Kathy

  • survivor726
    survivor726 Member Posts: 2
    #3
    Hi Kim,

    Hi Kim,

    I just read your post. Our son has been diagnosed with an Olfactory Neuroblastoma. What were the results of the MRI? Does your husband have an Olfactory Neuroblastoma? If so, I would like to know how he's doing and what type of treatment he is receiving?

    Thank you,

    D

  • MissBlueEyes4Life
    MissBlueEyes4Life Member Posts: 35
    #4
    I was diagnosed with this

    I was diagnosed with this rare cancer officially in march. Stage D spread to lymph nodes In neck. Confirmed by biopsy. But I had an mri later. I just finished 35 rads and only have one more round of chemo (they have me on cisplatin and etoposide) 

    I had surgery first to remove tumour in my nose that also started going into my frontal lobe. And I also had about 50 lymph nodes removed from my neck. Oh and they removed my olfactory nerve so I will no longer be able to smell and taste will be different.

    Currently trying to heal from radiation as it has some nasty side effects, but I am not even a week out. Must. Be. Patient! 

    I hope for you guys it is not cancerous. As this journey is not fun or easy. 

     

     

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